I participated in a summer service at our Unitarian
Universalist church in Stow on August 16th. Actually, I helped organize it. I invited several people who have had cancer
to share their thoughts with whoever attended the service. In the end only two of us actually presented,
which was a disappointment, but allowed the two of us to go into greater
detail. Here is what Johanna Pyle, a
Breast Cancer survivor, and I had to say.
Survival Guide to a Cancer Diagnosis
August 2015
As many of
you know, I spent the last calendar year dealing with a diagnosis of breast
cancer. To this day, I have trouble calling
myself a “survivor”, because although my treatment was not straightforward, I
never had to endure chemo or radiation, and there was never any question about
the outcome. There are so many, many
people who have had to endure so much more difficult treatment, with the
question of survival not necessarily assured.
Still, I have a new body as a result, and any journey through the Land
of Cancer is never easy, no matter what the circumstances may be. I would like to share with you some of the
insights and lessons I have learned, a “survival guide” if you will, perhaps a
“pay it forward” gesture in a small way.
Going through cancer has allowed me to gain an exquisitely heightened
appreciation of all the love and blessings that I have in my life, and that was
the most surprising part of the whole journey.
I would never wish a diagnosis of cancer on anyone, but some of you are
surely and sadly going to receive that diagnosis in your lifetime. And in many ways my life is better for it,
and a large part of me is grateful for having gone through it.
Part I: Getting the diagnosis
1. Breathe: I will never forget the phone call in which
the surgeon told me that the biopsy came back showing cancer. This sounds like a cliché, but I truly felt
like time stood still, and that the air had been sucked right out of me. I was totally unprepared for this, having had
“lumpy breasts” all my life and always had negative biopsies. After she talked for a while, and we made an
appointment for the next day to go over the pathology report, I hung up and sat
on my couch for a long time, awash in a feeling of panic and despair. My first thought was “I’M ALONE”, because I
don’t have a spouse or partner in my life, and it took me quite a while to get
past that thought process. But finally,
I remembered to take some deep breaths, and slowly it came to me: I’m not alone. I have 3 wonderful sisters, countless friends
and several “best friends”, and I have this church. So I picked up the phone, called my sisters,
and started the journey.
2. Reach
Out: My initial instinct was to keep
the diagnosis a secret from most people.
I’m not completely sure why,
perhaps because talking about it made it real, maybe because I felt
somehow I was to blame, but for whatever reason, it took me a while to share my
“news” with people. Telling my two
daughters was by far the hardest part.
But once I started telling people, I began to find out many important
things such as how many people have dealt with this and had so much wisdom to
offer, how there exists such a wonderful place as The Healing Garden right in
my back yard, and that it WASN’T my fault, etc. (although, secretly, I still
blame the fact that I heated up so many leftovers in Tupperware..sheesh.)
Reaching out to people meant the difference between trying to appear strong and
composed in the face of total terror, and finding people who knew exactly what
that terror felt like and who helped me gain control over that terror. And more importantly, I found out how many
people were there to help me go through this, which again reinforced the new
understanding that I wasn’t in fact alone.
3. Take
your time to process information: Although
some people don’t have the luxury, there was no particular hurry for me to make
any decision. The first course of
treatment, lumpectomy and radiation, was an obvious and clear choice for
me. After the second surgery, where they
STILL didn’t get clean margins (happens more often than you think – What? on
Grey’s Anatomy they always get clean margins!) I was faced with a more
difficult decision. Try for a third time
to get clean margins? Have a single
mastectomy, double mastectomy, reconstruction, what kind of reconstruction, no
reconstruction but beautiful tattoos instead?
Again, referencing #2, I spent a long time reaching out to people who
had gone through this, and listened and pondered, and pondered some more,
relying on my long-standing mantra that “the answer will make itself
known.” And eventually, it did, and I
had a single mastectomy with reconstruction.
“..Don’t let anyone bully you into scheduling surgery unless it’s a true
emergency. Say you need at least a day
to think about it. Talk to whomever you
need to, in order to process as much as possible about what’s going to take
place. Nobody can take your power away unless you allow them to do so.” -- It’s
Just a Word, Elizabeth Bayer
4. Trust your instincts and make sure you are
heard! Once you have decided on a
course of action, the next step is to decide on a team of doctors. This was a really difficult step for me,
because all of the doctors seemed to know a whole lot more than I did, and they
all came with great recommendations, etc.
Plus, I didn’t want to offend anyone J But it came down to one thing: who listened to me, and made me feel
heard? What did my instincts say? When I thought in those terms, the answer was
clear, and I was able to both decide on a course of action, and make great
choices regarding doctors.
5.
Get help formulating questions.
One of my greatest sources of support was my sister Tory, who happens to
be a nurse practitioner. Before I met
with several different teams of doctors and was trying to decide what to do and
who was going to do it, she and I made a phone date to formulate
questions. I did this with a couple of
other friends as well, and by the time I went shopping for doctors, I had an
organized, double-spaced, printed out list of questions that addressed all my
confusion (i.e. what does X mean?) and concerns, and allowed me to take notes
with each doctor for later comparison.
Also, bring someone you trust with you, to be an extra set of ears. This is very important!
Part
II: The surgeries.
6.
Tolerate the unknown: As
Rachel Naomi Remen said in my first reading,”...Wisdom comes most easily to
those who have the courage to embrace life without judgment, and are willing to
not know, sometimes for a long time.
“For me, this meant again letting go of control, because as I entered into the
biggest surgery, the single mastectomy, I had very little knowledge really of
what was going to come after. I had to
simply trust that I made good decisions, and leave the rest up to the
doctors. I didn’t know how much pain to
expect, what I would look like, and how long it would take me to be back to my
“old self”. It really required me to
live in the moment, take each day as it came, and let the journey unfold. And, as I got better and back to my routine,
I had to think of that in the bigger sense as well. I didn’t know if or when I would meet that
significant someone and how they would react to the changes my body
experienced, or whether or not the cancer would come back. There are so many things we just can’t know,
and I have become much more willing to tolerate this state of
unknowingness. And, reducing any
specific expectations made adjusting to the resulting reality that much easier.
7. Think
positively in every regard: Prior to
my first surgery (and now, I am up to five…), I met with a psychologist who
specializes in preparing people for surgery.
She helped me develop a meditation that involved visualizing in a very
positive way what I wanted right after the surgery, a week later, and then
several months later,. I also wrote
healing statements with her, which again stated things in a very positive
manner. Not, “I don’t want to feel
pain”, but “when I wake up I will feel comfortable and the nurses will be
helping me.” The nurses in the operating
room read these statements to me while I was under the anesthesia. She also
encouraged me to send out a request to friends and family to send me their
healing thoughts and prayers as I went into the surgery. At first I was pretty uncomfortable with
this, feeling like I was drawing too much attention to myself and putting a
burden on my friends and family. But in
every case, I have had a remarkable outcome with very little side effects from
the anesthesia and speedy healing. And
knowing that so many people were holding me in their thoughts and prayers was
an incredible, wonderful feeling.
8. Let go
of “shoulds” – make life as easy as possible, and ACCEPT HELP! This was very hard for me to do. I had planned to accomplish a number of
things during the upcoming school year, and was reluctant to let anything go. (I.e.
working full time plus tutoring on the side, teaching a graduate course,
singing in two choirs, etc.) Needless to
say, it became very clear that the only thing I really had to do was go
through this Cancer Journey in the best way I knew how, and that included
letting go of all the “shoulds” and sources of stress in my life. There were still many things I wanted to do,
but I was the only one telling me what I had to or didn’t have to do, and it
was incredibly liberating. And as a very
good friend said to me, “don’t say no to anything!” People enjoy helping other people, and if
there was ever a time I needed help, this was it! The combination of relieving
myself of stress and accepting help was a very important part of my healing
process. Which leads me to #8:
8.
Allow yourself to heal: Again, this was hard for me.
In case you haven’t noticed this about me, I have very high expectations
of myself, and I’ll be damned if I was going to let a little thing like breast
cancer get in my way. But after the
surgery, I wasn’t allowed to lift my arm above my shoulder or lift anything
heavier than a gallon of milk for a month.
That felt like a looooong time to me.
But as I’ve said to many people, I was finally able to “embrace my inner
couch potato”, and slip into what I came to call my healing cocoon. Many people have commented that their brains
are the last thing to heal, and in fact I had a lot of trouble after all the
general anesthesia with word finding skills.
My daughter likened it to Mad libs:
“Sarah, can you get me the […um…noun] that I left in the [...um…another
noun.] “ I was quick to get frustrated
with my temporary loss of brain power and limited mobility. But many, many
people kept telling me, “you have been through a big deal, you are allowed to
have healing time. Tolerate the
unknowing of when you will be completely healed, and allow yourself that
time”. Easier said than done, but
looking back, I was glad to have people saying that to me over and over again.
9. Expect
that your life will be different, no matter what the outcome: As I approached the reconstruction surgery, I
kept tormenting people like my sister with, “I wonder what I will look
like?? I wonder what I will feel like??” She finally said, “Look, no matter what you
will look like, it will no doubt look and feel different from what you are used
to or to what you are expecting.” This
was very true. There is no way for
anyone to know what the future will hold, and in this case, it was clear that
it was going to be different, no matter what.
I had to really think about that, and understand that yes, it was going
to feel different and that was ok. It
may be better, who knows?
10. Always
remember that you are surrounded by love.
I have never felt so loved in all my life. The thoughts, prayers, cards, meals, prayer
shawls, books, music, movies, rides, and company that so many people shared
with me were in unending supply. I have
always believed that showing and feeling love was a critical component to a
good life, but having cancer truly brought that home to me. “The realization struck me that the love is
everywhere for everyone, all the time; it’s just that most people aren’t
looking for it, so they don’t [know] it exists.
It does, and once you know it, you will see it all the time.” -- Elizabeth Bayer I knew that love existed, but I know now that
I never truly understood the power of love.
It is transformative and healing, and if it took cancer for me to gain
that understanding, then I am grateful for it.
I want to leave you with some final thoughts from Elizabeth Bayer:
“Love is
everything, yet adversity is the greatest teacher. So love adversity, and know that there are
always gifts.”
“It can show
you how many people in the world love you.
It can teach you compassion, for yourself and for others. It can put you in tune with the strength you
never knew you possessed. It can propel
you to do all the things you thought you had time for, but never did. It can help you cherish the present
moment. It can assist you in offering
forgiveness and being forgiven by others.
It can teach you humility and gratitude.
It can help you ask better questions.
It can move you toward a life with more meaning. It can raise you up to a higher level of
spirituality, even if that was never part of your life. It can help you let go of things that are not
truly important to you. It can make you
a better person, for yourself and the world around you” -- It’s Just a Word,
Elizabeth Bayer
“In my
moment of greatest vulnerability, I learned to embrace the journey, so I could
truly heal and grow. It doesn’t mean
that there haven’t been moments that suck – there have been, most
assuredly. But I’ve learned about the
power of will and intention, and how to carry faith deep in my heart.
From It’s Just a Word, Elizabeth Bayer
My contribution. You
may recognize the first part of it as having been part of this blog back in
2013
The
Unexpected Benefits of Having Cancer
(Written
Spring 2013 in the aftermath of a
Stem Cell Transplant November, 2012)
Stem Cell Transplant November, 2012)
One. Cancer
cures you of any sense of invincibility.
You, who may have been an aggressive athlete, who may have been a
competent professional, who may have been a leader in your town, are suddenly
unable to do much more than get to the bathroom and keep yourself clean. You who excelled at gathering and retaining
information, are suddenly barely able to read more than a page or two, and then
often with next to no comprehension.
You, who always cared for and provided for others, are now one that
others have to take care of. Yes, you
never tried to lord it over others, and yes, you tried to act like an ordinary
person, but suddenly you realize that your self-image was based on the ability
to get things done, to provide, to care for others. Without that capability, who are you? What do you bring to the table? Forget about invincibility. Your essence now has to embrace vulnerability. You have to accept that you are a mere
mortal. You were all along, but cancer
has a way of hitting you upside the head with that fact.
Two. Cancer opens
you up to emotional expression. When you
are lying there 9 days after your stem cell transplant, when you have no immune
system and your body is attacked by a raging infection, your gratitude that the
medical staff have the tools and the insight to pull you through, leaves you in
tears as you try to thank them. You are
unable to say thank you to your favorite nurses without springing massive eye
leaks. You have found out what it means
to “walk through the valley of the shadow of death”. When you tell your family what that felt
like, you are overwhelmed by the wonder of having survived the ordeal. Maybe you thought you had an appreciation for
the value of life. Now you know how
truly glorious life is. Nothing like
almost losing something to awaken you to its value.
Three. Cancer
makes you realize how key a role your family members play. The spouse who drops everything to be at your
bedside and then turns the house upside down to make it germ-free enough for an
immuno-compromised person to come home following a stem cell transplant. The daughter-in-law, who happens to be a
doctor, who interprets all the medical terminology and explains the doctor’s
strategy because she has access to the doctor’s notes. The siblings who come in from across the
country to share your experience. The
kids who take turns being with you because they have young kids, and nobody
under six is allowed on the hospital floor.
Family is key.
Four. Cancer makes
you acutely aware of all those people who really want to help you. Sure you had teammates, co-workers, social
acquaintances, and members of the various communities you belonged to. But you only ever expected family to rally
round when the going got tough. But all
those different people helped out driving, making meals, doing the chores you
used to do, caring for the dogs, … All
those different people responded to the LotsaHelpingHands appeals. You may have thought you were a lone ranger,
but in fact, you were a mouseketeer. All
those other mouseketeers are right there to help you and to plug the gaps your
disease has created. They say it takes a
village. And that is not just to raise a
child. It is to respond to one laid
low. Another nuance to add to your
conception of yourself. Someone who has lots
of friends willing and able to help out in a pinch. You never knew!
Five. Cancer
makes you appreciate the caring professions: doctors, nurses, people who scrub
the floor. The list starts with the
doctors. Maybe they are the ones who
restoreth your soul. But the ones who
really matter are the nurses. They are the
rod and staff that comfort you. They are
there to help. That’s their job! And they do it so well. The little tricks they have from seeing how
others cope, such as the lotion that relieves your raging rash. Or the cream that makes bi-hourly diarrhea
bearable. Or the hot blanket that brings
you back from the bone-crushing shivers.
And unlike the doctors, whose first names you only see on medical bills,
you only know the nurses by their first names.
Is this an attempt at anonymity?
Or is it a shield so that you can’t act on your crushes in the outside
world? Whatever, the nurses are your
connection to humanity that pulls you through, that gets you through the
valley.
Six. Cancer
makes you appreciate medicine, both the science and the practice. You are exposed to the practitioners who
decide what you have and how to treat it.
They carefully feed you enough information so that you can understand
and cooperate in the treatment. They
assess your physical symptoms throughout your treatment, and react to how the
disease is responding to their treatments.
But you realize that there are many aspects of the medical profession
that you never see, but which you totally rely upon. Pathologists read your specimens and
determine if the key markers are going in the right direction. Research scientists perform the basic
research that leads to advances in treatment regimes. Clinical doctors perform
the studies and clinical trials that demonstrate the effectiveness of new
treatments. Engineers and technicians
create the machines that see into your body, measure the key characteristics of
your blood in 45 minutes, give you color images of your heart and lungs in
motion, and separate the elements in your blood so that stem cells can be
isolated. You owe your continued life to
both the science and practice of medicine.
Seven. Cancer
lets you know how much it helps to express yourself in writing. Beth Israel Hospital publishes a Book of
Writings each year with writings from various cancer support groups. As many others who have written for the Book
of Writings, the written word helps you form vague feelings into crystalized
emotions. You have never been through
such an experience, and you want to share that experience with others. Writing helps you share, and in doing so,
helps your own realization of what you have been through. It may still amaze you that people care to
read your drivel.
Eight. You
have reasons to be thankful. You may
have cancer, but there is always someone who has a worse case than you do. During my stem cell transplant, I heard of
two people who had stage 4 cancers.
Before I got home they were both dead.
As you get up off your hospital bed and begin walking slowly around the
ward, you see others at different stages of their treatment, with other types
of cancer, and different intensities of cancer.
You may have been feeling sorry for yourself, but there are others far
worse off than you. You may get there
eventually when your disease reoccurs, but for now you are in comparative easy
street. So cancer has a way of making
you thankful, even in the face of adversity.
Nobody chooses cancer. Everybody fights cancer as hard as they
can. But you learn something from
cancer, and it reveals a good deal about your life that you may have been unaware
of. Let’s hope that those revelations
are ones you can live with.
The above was written while I was basking in the
glow of having Multiple Myeloma in remission.
I had just had a stem cell transplant and a friend who underwent a
similar procedure was disease-free for 8 years as a result. But my disease reoccurred in less than two
years, so the glow did not last very long.
A friend recently asked, are there lessons you have learned from the
return of Multiple Myeloma? Since the
doctors are still working to bring the latest outbreak under control, I suspect
I am not finished learning lessons. But
here is a shot.
First, there are no promises. I certainly expected that the stem cell
transplant would last longer than 21 months.
I know they said the effects could be from 0 to N years, and N is not
yet known because there are people who have not had a recurrence. But I had expectations anyway. Getting a near-fatal dose of Melphalan (a
derivative of mustard gas), is no fun.
Yes, the stem cells are miraculous in their ability to reestablish your
blood-generating system. Yes, the caring
professions are very good at their jobs of pulling you through. But the basic dose is not something one would
undergo for recreational purposes. Whatever
is the underlying cause of my disease must be pretty aggressive to come back so
soon. The doctors say their objective is
to find a combination of medicines that keep the Multiple Myeloma under
control, to make it a chronic condition, not a fatal disease. The idea is to keep you alive and kicking
long enough for something else to take you out.
After all, we don’t get a perpetual ticket. If there is a promise, it is that eventually
your days will come to an end.
Second, what worked before may not work a second
time round. Cancer is a protean disease
that can change over time to overcome the forces arrayed against it. In the summer of 2012 a three-drug cocktail
brought my key marker (Free Lambda) into normal range in 4 cycles. I have just finished my 4th cycle
of that same combination of drugs, and my latest reading is still 60% over the
top end of the normal range. Luckily
there are a number of new drugs that are available when the current drugs cease
to be effective. But you want to keep
those drugs in reserve, as they too may become ineffective over time. You want to have spare arrows in your quiver.
Third, having a compromised immune system is no
fun. I get colds at the drop of a
hat. Or rather, at the sneeze of a
grandchild. The first year after my stem
cell transplant I ended up in the hospital twice. Both times it was not long after spending
time with my grandchildren. I thought
swearing off babysitting for grandchildren between October and March was
sufficient. But this summer I got a cold
from a grandchild who had barely more than a slightly runny nose. I asked my oncologist if exposing myself to
the kids deliberately would help beef up my immune system. He said there are 600 rhinoviruses that cause
the common cold. If I have antibodies
for 6 of them instead of 3, it won’t make much difference. So do I have to swear off grandchild
babysitting year round? Or do I perform
experiments to see if it is holding them, or reading stories to them, or giving
them baths that cause the subsequent infection?
Swearing off grandchildren completely is not an attractive option. Not an option I want to contemplate.
Overall, I think I still have many lessons to learn
from the second stage of my cancer. The
lucky thing is that throughout my recurrence, I have been feeling good. The symptom of the first stage of Multiple
Myeloma was compression fractures of my vertebrae, which aren’t very pleasant. Luckily, even though my Free Lambda reading
got to be 74% of the original reading, I had no symptoms this time round. Yes, Multiple Myeloma is an incurable,
inevitably fatal disease, but so far it has not felt that way. Multiple Myeloma is like Life itself: an
incurable, inevitably fatal condition.
We both thought the service went well, and we both gained
tremendously from having to prepare for it.
The people who attended the service had lots of things to say about
their own experiences (first or second hand) with cancer and questions about our
reactions to our disease. So overall, it
was a good thing.
